Two

It's official: sledgehammer therapy works. I started off the day with three hours of pounding and destruction. Sometimes the tears were from the sheetrock dust in my eyes. Sometimes, from Maura in my head. Why did no one ever seriously tell me that hitting things felt so good?

In the evening, I went to the MD Anderson Blood Center to donate platelets. The technician did not want to take my platelets.
Who are you donating for? 
What? 
What patient are you donating for? 
No one.
He wanted to draw whole blood because he said my veins were small and the needle was big.  I think his opinion may have been influenced by the fact that I was the last appointment of the day, and he wasn't going to get to go home on time if he collected platelets. Or maybe he was truly worried that my vein would blow up and I wouldn't be able to donate anything? Either way, I would cause a problem.
What patient are you donating for? 
No one in particular. I just know you need platelets.
MD Anderson needs whole blood, too.
I'm usually not very assertive. Usually.
Yes, but I want to donate platelets. I know that a patient has less of a chance of having a reaction if the platelets come from just one person. 
The technician's shoulders slumped and his eyes drooped a bit. I bet his wife had dinner on the table. I should be less selfish and let him draw whole blood. It only takes a few minutes. His dinner would be covered with foil and stuck in the fridge by the time he got home if  I insisted on platelets. He pleaded his case to Joel.
It's a 16-gage needle. The vein might blow.
Joel stood by me.
She wants to donate platelets.
The technician looked defeated. 
Who are you donating for?
I want to donate in memory of my daughter who died from cancer two years ago today. Please let me try.
He instantly morphed into the complete healthcare professional. The tired man that had slipped through the cracks for a few minutes was just an aberration. He was both kind and efficient.
Everyone gets tired. I honestly don't know how health care workers don't lose it more often.

I thought that the 19th would be a wallowing day. It clearly wasn't. Pro-active planning on my part certainly helped. But, as I've said before, grieving has its own timetable--not always convenient, for sure. When I checked in with Danielle last night, she said that she was so focused on work that she also set aside wallowing. Wise woman that she is, she also said she knew it was building inside her and that she would soon need a day to let it out.
The pressure valve is always pushing toward the red mark.

Maura, we miss you so much. It was so neat to see so many of your friends still posting about you on their facebook walls.
And to you on yours.
I love you.

Week

I find myself in the thick of the week leading up to the second anniversary of her death. Overwhelming memories. On this date, such-and-such happened. The fateful call to Dr. B. on Sunday, the Monday morning he told her that she was dying, the visit by the Dynamo, her graduation from SHSU, the conversations, the hospital full of people, her hospice set-up at home, the Goodbye concert, the constant flow of people, the vigil, the last hug.
Mother's Day was once again not the best. Not as bad as last year, but still quite difficult, partly, because I tried to donate blood but was rejected due to high bp; I took it hard because I wanted to give for Maura. 
For my birthday, I proactively organized Chinese take-out and game night--that worked out well. 
I'm working lots of hours in somewhat of a fog. Vietnam is dangled in front of me--postponed  and reset and postponed and reset and postponed and reset.
Anticipating a bad day on the 19th, I took the day off. On that day, Joel and I will help tear down walls at the church. I hear that swinging a sledgehammer can be therapeutic. In the evening, I have an appointment at MD Anderson to donate platelets. If I can successfully donate, then I think I'll make a tradition of donating on this anniversary

Saved

Sue

My blog friend, Sue, has inspired and comforted me a lot over the last years. She has made lots of blog friends feel better with her words and her example. She praises God when she's sick. She praises God when she is well.  I asked and received her permission to re-post this from her blog:


SUNDAY, FEBRUARY 6, 2011 11:09 AM, CST

Speechless 
For the first time on Caring Bridge I don’t know what to say. So much has happened in the last month and it has brought about many changes. I had a stroke, a brain bleed from the tumor we learned was in a critical area of the brain. It has left me a bit weak, but I know that God is healing me in His time. These are the facts.
But with God, facts are just incidental.
God moved mountains to get me the help I needed. He kept me alive. He brought me angels of goodness and mercy who fought for my needs. He opened doors to a neurosurgeon and a hospital that people come from all over the world to see. He gave me a special life-saving procedure in just days instead of months.
I find myself speechless when I think of the perfection of God’s love.
I find myself speechless when I think of the perfect plan God holds in place for all of us.
I find myself speechless when I see the love and devotion of my family...my children, my adoring husband.
I find myself speechless by the generosity of strangers and friends who have reached out to me.
All I can do is praise God. Thank God. Stay open to the future with a hope and a purpose that must be God given.
And I thank you for taking this journey with me. For your prayers, especially. I feel them, and they light up my life.
Speechless isn’t such a bad thing. It transcends the facts and looks into the heart for the real joy of being alive.

SUNDAY, MAY 1, 2011 12:22 PM, CDT

The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid?When the wicked advance against me
to devour me,it is my enemies and my foes
who will stumble and fall.
though an army besiege me,
my heart will not fear;
though war break out against me,
even then I will be confident.
Psalm 27: 1-3

Stumbling and Falling
Did you ever think you could be praising God for stumbling and falling?
I know that sounds ridiculous, but I have been doing just that since early February when I returned home from weeks in three hospitals. I found out I had a brain lesion that was bleeding into the pons area of the brain. I also found out just how serious a situation that actually was. Apparently, if one is to have brain metastasis from kidney cancer, the pons is the last place one would want it to take up residence (is there really a good place in the brain for cancer, she asks innocently???).
So there it was: added to the cancer mets in the lungs, the lymph glands, the mediastinum, and the anterior acetabulum hip bone...now there was cancer in the brain.
I kinda like my brain. I relied heavily on it throughout my life. Perhaps too heavily, I now realize. You see, I relied more on my brain, my wit, my wisdom, than I did on God.
Cancer taught me to rely on God when I was told I would most likely die on the table during my first surgery (kidney cancer: kidney removal) almost seven years ago. Chalk up one for a little less brain reliance and more God dependence.
Cancer taught me to rely on God when I was diagnosed with two more cancers: thyroid and sarcoma. Chalk up two and three opportunities to rely less on my brain and depend more on God.
And then came the “biggie.” Cancer in the brain. Cancer in the part of the brain that dictates most of what makes us human, what makes us function.
Apparently, the brain lesion had been bleeding for about three months. As is typical when relying on brain wisdom rather than God truth, I plowed through two of those months ignoring my symptoms. I even mentioned to my oncologist that it “was as if a switch had gone off in my brain.” Of course, when he suggested an MRI, I said no.
That’s what you get when you rely on your brain: FEAR-based decisions.
When I ended up in three hospitals after a month of vomiting whenever I lifted my head off the pillow...after a month of not being able to brush my teeth because I couldn’t keep anything in my mouth...after a month of not eating one morsel of food or water...it finally became obvious even to me...
This stubborn, fearful, controlling person was alive ONLY because of the grace and mercy of God.
He had protected me, covered me with His love, despite-or maybe because of-my stupidity.
Chalk up number four in the Opportunity to Know the Truth department!
I felt so loved, so protected.
So grateful.
God had kept me alive for a purpose, for a divine reason that is still almost completely unknown to me.
Except for this: To share with you the significance of praising God for stumbling and falling.
When I returned home from the hospitals, I was very weak from weeks of inactivity, from very limited nutrition, and from my body fighting all the invader cells that have taken up residence. A friend visited me and told me about watching a television minister she loves and respects. This minister read Psalm 27:2 and declared she had had revelation during meditation that this verse was a direct reference to cancer.
“When the wicked advance against me to devour me, it is my enemies and my foes who will stumble and fall.”
When cancer cells would try to increase in order to devour my healthy body tissue, they would HAVE to stumble and fall!
This was God’s word to us. This was God’s promise to us. This was God’s purpose for us...for us to be more than conquerors...for us to have the strength to do all things through Him.
I spent much of my life arguing, with people, with ideas, with my own brain-created thoughts.
I DON’T argue with God.
So, I started praising God.
For protecting me.
For loving me.
For His Word.
And His Word said that the cancer cells in my body were stumbling and falling.
And so I praise Him, for His Word, for His Truth.
And for the cancer cells stumbling and falling.
What is attacking you? Is it a thought wrought with fear? Is it pain in your body or your heart? Is it illness? Is it lack?
Whatever it may be, stop worrying and start praising. Praise with confidence that what God has declared, He is able to deliver. Praise with faith that in God’s perfect timing there will be tangible results.
Praise God for stumbling and falling. Whenever a fearful thought takes control of your brain, praise God that the (insert fearful thought here) is stumbling and falling.
And then wait...in Truth...in Peace...in Love...in Confidence...in Hopeful Expectation...in God.
By the way, I had scans the end of March. After three months of treatment that did not work (this treatment ended in December)... after another three months of no treatment because I needed to rebuild my body after the brain bleed...
The radiology report stated there was SIGNIFICANT REDUCTION in all mets!!
The oncologist was confused.
He is a man of science.
I am blessed.
I am a child of God.

Teal Out

Sam Houston State University's Colleges Against Cancer, a student club affiliated with the American Cancer Society, sponsored a SHSU "Teal Out" baseball game to promote SARCOMA awareness and raise money for the ACS.  We were invited to attend, and Joel threw out the first pitch. Between innings the announcer read facts about sarcoma, and they had information about sarcoma at the entrances. The shirts that they sold were teal. The writing said, "Teal We Find a Cure. 2011. In memory of Maura de Souza"
It was pretty cool.

Proton Therapy

MD Anderson asked me to post a link to the video below, about a boy who survived cancer through the use of proton therapy. But first, here is a little blurb I found on their website about the use of proton therapy on sarcomas.

Sarcomas are rare, malignant tumors found almost anywhere in the body in both children and adults. Because most sarcomas are quite rare, many oncologists may have treated few patients with these tumors, if any. MD Anderson Cancer Center treats more sarcoma patients than any other cancer hospital, enabling physicians to build on their expertise in an ongoing effort to discover new therapies and diagnostic methods. This same experience in dealing with sarcomas extends to MD Anderson’s Proton Therapy Center and the development of proton therapy treatment for many types of sarcomas.  Most often, proton therapy is used in combination with other types of treatment for sarcomas. Surgery is the most common treatment for soft tissue sarcomas. Radiation as a stand-alone treatment for sarcoma is not as common but can be used for patients who are not healthy enough for surgery or to ease pain and other symptoms of disease

Sarcomas can be treated with it, but not Maura's unfortunately; her tumors were both too big and too numerous. Plus, I don't think it's used yet to treat all types of sarcomas, and since her sarcoma defied type, not a chance. Maybe it will be different in a few years. 

It makes me happy to hear of others surviving cancer, especially kids--I feel like their victory is also mine. But, to be honest, it also saddens me as I wish it could have been so for Maura.

Rest in Peace, Elsa Dias

Elsa Dias died early Sunday morning after a ten-year battle with SARCOMA. Despite the fact that she submitted herself to several experimental sarcoma drug treatments, calling herself a lab rat, and had at least nine surgeries to remove new tumors, I think Elsa would prefer to be remembered for other things: She loved her two daughters, Filipa and Maya, and her husband, whose name escapes me at the moment. She loved her garden, and making beautiful flowers grow. She loved red shoes and the music of Leonard Cohen--lots of other great artists, too, but she really flipped over Leonard Cohen. She encouraged and inspired many others afflicted with sarcoma. She was particularly kind to me after Maura died, understanding the cruel nature of the disease and sympathizing with my loss from a mother's perspective.
Sarcoma has killed one more bright, beautiful person.

WWMD

I finished loading my groceries in the back of the car and pushed the grocery cart between the nearby cars in the Sam's parking lot--just cozy enough so the cart wouldn't dent its neighbors, as long as no one swung open a car door too widely.
Hmmph. Maura would have taken the cart to the shopping cart area marked off with guardrails.

I know this because she always took the shopping cart to its proper place, even if I had already scooted it to the sweet spot between cars. Once I asked her why. "Because I wouldn't want to be the person that had to fetch carts all over the parking lot. This makes it easier for that guy."

Back in the Sam's parking lot, I looked for the telltale guardrails. They were several parking spots away.
I dismissed the idea and hopped into the van, put the keys in the ignition, and...

What Would Maura Do?

I hopped out of the van, carefully guided my discarded cart out from between the cars and walked it pass the ten parking spots to the shopping cart area.

I haven't left a shopping cart unguarded since.

Faith

I find that my faith has been strengthened through all of this. Initially, doubts, but, ultimately, a recognition of the obvious: we will see her again.
And it will be a joyous reunion.
"...the redeemed of the Lord shall return...and everlasting joy shall be upon their heads..." Isaiah 51:11

Marine

Joel and I were recalling a time about a month after Maura's death. It was a good 90+ degrees, a hot a humid Houston summer day. And the air conditioning was broken.  Walking up the path to our front door was a United States Marine in full dress blues. Is that what the fancy uniform is called? He looked impressive, almost regal. When we answered the doorbell, I recognized him: Michael, a boy I hadn't seen since he was in middle school. Maura had a crush on him when she was in sixth grade. He played the Wizard to her Wicked Witch of the West in the school play.

We laughed a lot when she got that part. Type casting? No, but she must have shown them that she could cackle. She came home crying the day that the cast list was posted. I tried to console her, knowing that sixth-graders rarely got cast in the play. She sobbed and sobbed, unable to speak. 
I asked, knowing the answer already, "You didn't get a part in the play?"
"Yes, I did," she managed to blurt out, "I'm the Wicked Witch of the West." Giant sob.
What? I was confused. Was she sad because she was cast as the witch? It's a great part, but maybe she wanted to be somebody prettier?"
"Are you upset that you got cast as the witch?"
She stopped crying for a nano-second to give me that wonderful look of sheer disgust that I could be so stupid.
(I did not see the look again until she was in 8th grade, when it became her constant companion for a year.) Then, the floodwaters again. "So-and-so was mean to me on the bus."
This is what parents are good at: laughing on the inside, while maintaining a sympathetic tone on the outside.
What followed was an awesome discussion about not letting others rob you of your joy, one parental talk that she listened to and obviously put into practice.

Eleven years later, the Wizard, disguised as a grown-up marine, came to pay his respects. He brought flowers and apologized for missing the funeral, but he was stationed in California and couldn't get back until now. I was a lousy hostess, still very much out of my mind. He was obviously uncomfortable from the heat inside my house, but I think he had to ask for water because I forgot to offer him anything. His uniform looked heavy. Someone ran for the small fan and aimed it directly on him.  We spoke of his future and Maura's past.
A good visit.

Blue

I suppose it's inevitable. The bloggers I follow are mostly people fighting cancer of various kinds.
One of them just found out she has mets in the brain.
Another one died this week.
Both of them have inspired others with their words.
I admire them.
I will miss Daria.
Please pray for Sue.

Dear Friend,

First, never ever ever apologize for writing to me. You are right: I DO get it. I'm one of the few people you know who truly gets it. I reached out to you last fall because I knew you needed someone like me and, frankly, I need you, too.  It's true that I've lived this longer than you have, but so what? My support group leader has been living this new reality for seven years, and she still needs someone like me, too. Just like I need her. And, btw, she is very emotionally healthy now.
And, someday, you will, unfortunately, have the opportunity to be there for someone else who will join "the wretched club." It will be a tremendous blessing to you.

I know I've said this to you before: everything you are feeling , I have felt (feel still, sometimes or lots of times): the devastating loss, the agonizing , hard-to-breathe heartbreak, the absolute hopelessness and searing pain. Agghh! It's horrible and awful and so incredibly hard to think it could ever get easier.

Forget the idea of moving forward. I think it's a bad phrase because we don't EVER want to move forward if that means moving AWAY from our daughters. So, leave that phrase to the blessedly ignorant. I haven't come up with a great substitute phrase, but it needs to be one that doesn't involve going away, although I like the whole journey imagery. Maybe think of it as adjusting, learning to live in your new reality. I'm still working on the perfect sentence. When I find it, let's market it and make a fortune!

Do not hide her pictures or nick knacks. Do not avoid her friends. Do not avoid talking about her. Do not forbid the mention of her name. That doesn't mean that you can't postpone talking about her if it makes you uncomfortable. Some people you can cry in front of, others, not so much. And some days you don't feel like you can handle the tears, so it's okay to avoid and postpone.  Example: Lydia brought me the DVD of the play that she wrote and performed about Maura. I did not watch it while she was in town, nor did I watch it with Joel or Danielle. I watched it by myself just this Sunday. I thought I might prefer to cry by myself, without having anyone check on me or worry about me. And I knew that I might want to wail a bit; yes, wail...loudly. So, I just needed to be alone.

I'm not trained, so I don't want to say yes or no to you being clinically depressed. Please consult a qualified physician.

But, regular depressed? Heck, yeah. It's called "sadness."  You are very, very sad. And it's normal. It's an emotion that God invented. And deep sadness proves that we have loved deeply.
I think that after a year you might be able to look back and see that the pain has shifted to where it's not right on top of your heart so much.
I know you don't want to feel the pain, and I can promise that it will get better. It will get better. It will get better.
Here is my prescription:
Go out, even when you don't feel like it.
Don't expect to feel better when you do. You might, but  probably not.
Go grocery shopping, even if you just push the cart.
Walk around the block.
Put gas in the car.
Go to your daughter's house. 
Go out to lunch.
Go to church, but sit in the back.
Rake a few leaves...not many...in the front yard.
The trick is to push yourself to go out, but not to have any expectations of feeling any better.
The triumph is simply to get out of the house and within 10-50 feet of another human being not closely related to you.
Eventually, you'll get stronger, but you won't notice it for a long time.

The what-ifs can be devastating. It's hard not to fall into that trap. Every time I start to wonder about her medical treatment, Joel reminds me, "No more pain." he's right. Anything else would have prolonged her suffering. God didn't need one more radical treatment to cure her. He could have done so on Day 1. Or Day 301. That brings up another source of pain: why didn't He? I honestly don't have an answer for that, or, better said, I don't have an answer that is good enough. None of the answers I've come up with, or the ones that others have kindly bestowed upon me are good enough. Duh. Because nothing I can imagine can justify God not wanting my daughter to live here on this earth with me. Nothing. And I fruitlessly keep trying to imagine what could. That's where faith really helps. Or is it hope? Or both. In either case, most of the time, I'm okay with waiting until Eternity to find out the answer. I suppose by that time, it won't matter anymore. (Hope involves waiting...that's always easier to understand in Spanish and Portuguese since the two words are one and the same)

And remember that happiness and sadness co-exist.